Chapter 5: Inclusion in Public Schools

Lisa: David and Kate, you were saying that your mom worked so hard to get David and Walter and other kids with disabilities into school and was being sued because she took them out of school, all because she was really looking for what was an appropriate education.

Kate: Yeah.

Lisa: But eventually, Walter and David did go to the neighborhood public schools, is that right?

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Kate: They did. They went to Sullivan, which was the neighborhood school.

Lisa: And how did that come to be? I'm curious. How did the lawsuit resolve itself, and was your mother comfortable with sending Walter and David?

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Kate: No, not at all. She wasn't comfortable. So during this whole period of time, the question was still, you know, the question was still "what is an education," so you have a right to what, exactly. And so, when David and Walter went to Sullivan, I was going to Sullivan at the time, so David and Walter were in Sullivan, and the beginning of the right to education meant that instead of individuals being warehoused in institutions, smaller groups of individuals were being warehoused in classrooms, and the classrooms were often in closet in some cases, depending on how many students there were, in basements, in boiler rooms, in, you know, abandoned parts of buildings. It wasn't -- it wasn't that children were really integrated into the schools. It's that classroom space was provided. When we were in Longfellow, the pilot program had developed to such a state that there were groups of individuals like the women's auxiliary of Frankfurt Arsenal, and Dr. Concors, our doctor, for example, people gave money, and the money bought the equipment, and so the classroom in Longfellow was full of equipment. There were balancing boards, and like you have eventually in physical therapy where steps that go up and steps that come down, and David a walker that he walked in that was sort of this metal cage that went around him, and he stood in the center of it, and it had wheels, and he moved around with it. In Sullivan, we were back to classrooms that basically had nothing at all, and so, part of the question was, what are kids doing all day long?

So I can remember my parents sending me during school, I had to sneak out of the classroom for frequent bathroom breaks so that I could go figure out where were David and Walter, and what was happening to them. So for parents who won this right to education, it was actually a really scary thing, because they weren't in the classroom with the kids anymore, and these children whom everybody considered vulnerable were now put in situations for what purposes? And who was around them? And what was happening? And where were they? And what was going on all day? So those beginning school rooms consisted of kids who were tied into the chairs so that they wouldn't get up and move or get hurt or do anything, and so, (To David) I remember one report on you David said that you were much more adaptable than Walter was, and it said that you were more adaptable than Walter because you learned to sit still in the classroom, and Walter wouldn't sit still in the classroom. Well, Walter was a teenager, and I don't know any teenagers who do that, and So it was just kind of an interesting thing that a good student was a quiet student, and a good student in the classrooms were the students who just sat still, and if there was any risk of them getting up, like I said, sometimes they were tied into a chair. So, what parents were asking, then, what the heck is this all about? You know, is this really what we were fighting for? Is this the Education that we were fighting for? Is this showing the capabilities? And this was part of the researchers coming and answering the question, can children with significant disabilities learn? Can children with significant disabilities grow? Is there hope for the future, or do we plateau at the mental age of one and a half years, and that's it? And so, that's what it was like.

The other thing that happened in the first school, certainly I saw it in Sullivan, David and Walters classes were moved. As the children came in, they would come in later than other kids and leave before other kids, and then during the breaks, they would take breaks at different times than the other kids, and so this was not mainstreaming when people talking about mainstreaming, this wasn't mainstreaming. This was before mainstreaming where everything was still really, really secluded.

Lisa: So given the variance in the drop-off and pick-up times for kids with disabilities at this school, and you referred to the bathroom breaks you would have to take to kind of check in on your brother's classroom and see what was going on, was there ever any opportunity in the school for you to interact with David and Walter?

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Kate: No. They were moved -- both David and Walter like I said were moved in a way that there was no movement of the classroom with the general population moving. It happened at different times. I only remember one time that it happened, and I was really unprepared for it, and Sullivan is a school with a very long -- it's like a peninsula. The school yard has sort of a peninsula in it, and I was down at the end of the peninsula, and David and Walter, the class was going through the school yard to move someplace else in the school, and they were going through the school yard, and all of the children started chanting about the retards that were moving through the school room and through the school yard, and it wasn't observational. It wasn't just observational. All the kids stopped. (To David) Do you remember this? So, all the kids, you and Walter were walking across the school yard, and all the kids stopped and started yelling and yelling and yelling at you, and it was really shocking to me, because that was the first time that I really, like it was the first time that I really understood the discrimination aspect of it.

I sort of understood things that were happening in the meetings that mom was going to these meetings, but it was the first time, because every other time I was with David and Walter, and so this was the first time where I was like standing on the other side with everybody else, you know, so I was over here with them with-the rest of the kids, and I was behind the wall of kids, and all the kids were facing David and Walter, and it was really shocking what that all looked like from that point of view, and I was so scared, and I didn't even know what to do. Like, what would those kids do to me if they found out, you know. What would happen to me, because they were being so mean, what would happen with all of this, and then before I could get through to the other side, David and Walter had gone into the school, and it was over, but it was really lasting impression of, you know, what do, what do my peers think of this, because you know, I thought have been had a disability, so all my peers had disabilities, so I never thought about it that way, and it was my first perspective looking, and the other side, kids moving quietly from classroom to classroom, and you were excluded from the playground, and excluded from the swing set, and excluded from all of the regular programs, and excluded from the cafeteria, from everything. It was pretty harsh. Lisa: David, do you remember any other time in your life where you were teased that way or you felt discriminated against in a similar way?

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Kate: (To David) Do you remember sitting on the porch? Sitting on the porch with Walter and really, in the summer, to get out of the house? Because we could go out and play, but David and Walter couldn't go out and play, and you and Walter with sitting on the porch with Louie, our dog, and kid would go by, and they would holler at David and Walter, and they would throw things at David and Walter, and we had a very nice dog that learned to be a very vicious dog, and so the dog would stand at the top of the steps, and if anybody came up, I think that the dog would have killed them, because the dog could see the aggression, and so people would go down the street, and they would throw things at you. It was kind of interesting, though, because it sort of changed. Like the kids -- it ended up that the kids who knew us and knew our family, they didn't even -- I don't remember them saying anything about it, and so it was usually kids who didn't know who were really mean, and then once people understood, you know, learned our family and anything, it just was not even an issue. I don't know that it was accepted, but nobody talked about it or anything. I can tell you, it was really hard to keep it a secret, because we were in the news all the time. So, you know, there were dozens of front page articles where you know, as the court cases were developing, we had news crews at the house all of the time, and you know, I couldn't exactly fly under the wire with this, and you know, and I think then all of the kids that we went to school with sort of learned that we were affiliated, so they never said anything in front of me. I don't know what would have happened if they did. So I think we are probably glad that didn't pan out.

Lisa: Did you feel different from other kids because you were a sibling of brothers with disabilities?

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Kate: No, I felt different from other kids because we had 11 kids. So -- [laughing] we weren't exactly typical I think.

Lisa: You told me a story that I think is really interesting. I wonder if you would share it, David, if you would allow me to ask your sister [to tell] the story. You had mentioned busing earlier on in our conversation, and the fact that the Sullivan school was maybe not as close to your house as Longfellow had been.

Kate: Yeah.

Lisa: And then it was a long walk, and that walk was probably difficult for your brothers to do and your mom to change.

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Kate: Well, actually, as the court cases were going on, there were a number of periods of time where my parents were offered things so that if they received these benefits, that hopefully they would stop, and so, one of the benefits that they were offered was that there would be a cool bus that would come and take David to school, and so, there were these negotiations that happened with the school and with the school district to try to ameliorate the litigious dispute that was ensuing, and so the school bus was a bribe, and so my mother accepted the school bus, that she accepted the school bus so that all the kids in the neighborhood would be able to be on a bus, except me. I was not able to be on the school bus. I still had to walk because my mother accepted the school bus for other kids, and then she continued to have the dispute with the school systems, and so it really did not do any good as a negotiating tactic, but she got busing for the rest of the -- you know, it would have been bad if she had me ride the school bus and she still fought them. So this way I got to walk. (To David) All the other kids got to ride the school bus, including you. You got to ride the school bus as well, and I still had to walk for blocks and blocks to school every day. You're welcome.

Lisa: You mentioned litigation, and one of the things that your mother was involved in, David and Kate, is really advocating for life skills to be part of the school curriculum, and I wonder if could you tell me a little bit about why that was so important to your mom.

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Kate: Life skills were important to the curriculum because as I mentioned, the original class had individuals of various ages, and so the question was how do people have some degree of independence, what's going to happen, and what's going to happen if something happens to their parents, and is the only course really course to be institutionalized, and so for my mother, the most important thing was that everybody had a right to live in the community. It wasn't just the education, you know, so she was already, already conceiving of what a full life should be, what a full lifespan should look like, and so it was a means to an end that individuals who hadn't done anything for themselves, who maybe had been in the house. They couldn't necessarily get down to the basement to do the laundry, you know. The houses were inaccessible. They were row houses. But education really meant what is it for you to learn and grow, and what do you need to learn and grow, that the purpose of my mother would say the purpose of education was to teach you to be a citizen. That's what we used to think in the olden days, because we used to have citizenship classes and things like that, and so it was to teach you to be a contributing citizen of society, so life skills were an important attribute to being a citizen including in society that, you could do some things and take care of some things for yourself, and not cut things out of magazines and stick them on paper, and part of it was also that as the students grew up and started getting older, then they started progressing to other schools. So in Sullivan, the question was toileting basics, how do you go to the bathroom, what are the steps to going to the bathroom. You turn on the light. You wash your hands. You have to wash your hands when you leave the bathroom. You turn off the light. All the dressing skills that are involved in this, and so in elementary school, a lot of your class last really around, supposed to be around those kinds of life skills. Later, as the classroom moved to junior high, and there's home evening classes, are there stoves, are there ovens, are there kitchens? Are we really in an environment that's assimilating a regular home, and how do we have the skills just as we used to have, you know, have cooking classes and home-ec classes, that the life skills were being taught to in traditional classrooms, so those same things should also be taught in these classrooms. A level of expectation of being a contributing member of society. Lisa: Do you think the Pennhurst litigation and ultimately the closing of Pennhurst underscored the needs for those kinds of classes?

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Kate: I think that Pennhurst underscored everything for parents of that generation and that our mom was really no different. I think parents woke up every day scared to death about what would happen when they were gone, and every single breath that they took, and every single thing that they did was to give their child the best possible outcome when they died, and so what would a measure of independence look like. I know that, um, for my mom, she thought that David and Walter, at one point she thought David and Walter would end up in Pennhurst institution, because the class-action suit hadn't started or anything, and that she thought that's what would happen when she died, and so she fought every single day that that would not be an outcome, that it just was not an acceptable outcome.

Lisa: Thank you. David and Kate, your dad retired in 1976.

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Kate: We are only up to 1976!

Lisa: I know, only up to '76.

Kate: That's like one year every 40 minutes.

Lisa: It probably takes even longer to really tell a year.

Kate: Yeah.